My boy has cystic fibrosis but I count my blessings every day

FOR years, Esther Rooney battled a painful condition which made it unlikely she'd have kids.

FOR years, Esther Rooney battled a painful condition which made it unlikely she'd have kids.

So it felt like a miracle to fall pregnant at 39 while waiting to have a hysterectomy.

But then the joy turned to heartache when she was told her baby had the life-threatening heredity condition cystic fibrosis.

It affects the internal organs, especially the lungs and digestive system, clogging them with thick, sticky mucus, making it hard to breathe and digest food.

Only around half of cystic fibrosis sufferers live past 35.

Esther, 48, who lives with her son Callum, eight, in Clydebank, said: "He's my little miracle, the child I never thought I'd have.

"Of course, I wish he could be healthy, but every day I've got him and care for him is special. I'm doing the best I can to give him the best life - just like any parent."

Esther had given up on having kids after years of trying. The wait for IVF eventually broke up her marriage of 10 years when she was 28.

She was diagnosed with endometriosis, where tissue similar to the lining of the womb is found elsewhere in the body. It can cause severe pain, heavy periods and infertility. But as her condition worsened, her chance of having kids looked even more remote.

Her next partner was 18 years older with grown-up kids and didn't want any more children. So she accepted she'd remain childless.

After that relationship failed, Esther met Ian McConnell when she was 39 and he was 37.

They'd been dating for eight months when doctors told her the endometriosis was so severe she might need a hysterectomy to ease the pain.

Ian booked a holiday in Lanzarote to cheer her up while she decided what treatment to take.

"I felt a hysterectomy was best as I felt too old for the other options of the pill or hormone tablets," she said.

When Esther returned from holiday, she was told the waiting list for the op was several months.

She didn't have a period for the next couple of months and didn't suffer her regular painful cramps. But she initially thought she was experiencing the menopause.

"I went to my doctor and he said there was no point doing a pregnancy test because there was no way I was going to get pregnant," said Esther.

But when she spoke to her boss about feeling sick and missing her periods, she insisted Esther go for a pregnancy test.

"I didn't believe it when the test came back positive," said Esther. "I went to five well-women clinics and each test came back positive.

"I was sobbing with disbelief but also feeling elated. I couldn't believe I was finally pregnant at 39.

"But then I felt scared as I wondered how I'd cope being an older mum. Ian and I weren't even living together.

"Ian was out with a friend and I told him the news on the phone. He left his friend, rushed round to my door and hugged me, saying everything was going to be OK."

But when Esther was 30 weeks pregnant, she was sent for a scan as she hadn't felt her baby moving.

Then doctors dropped the bombshell that her little boy probably had cystic fibrosis.

"I'd never heard of it but was devastated to hear something was wrong," she said.

"But when I looked into it, I thought it didn't sound as bad as I'd initially thought, so I tried to remain positive."

When Callum was born at 37 weeks in May 2001 weighing 7lb 5oz, the diagnosis was confirmed.

But then Esther was told within hours of his birth Callum would need a major op to correct a blocked bowel.

He'd also need other operations, medication and special physiotherapy to clear his lungs of mucus.

Cystic fibrosis affects more than 8000 people in the UK.

Over two million carry the faulty gene that causes the condition, around one in 25 of the population. If two carriers have a child, the baby has a one in four chance of having cystic fibrosis.

Esther said: "I blamed myself and his dad because we were carriers of the faulty gene without knowing it.

"But I realise it's just one of those things. Callum and I have an incredibly strong bond and I wouldn't part with him. I've got what I always wanted so I'm lucky in that sense. He's my priority in life.

"When I'd had Callum, a lady I met in hospital told me, 'God gives special children to special people'. Having Callum changed me for the better - I became less selfish. And I count my blessings for every day I have with him.

"There's research into gene therapy that might help carriers of the faulty genes.

"But it's not going to help the kids with the condition as they're already dealing with damage to their lungs."

Esther has split from Ian but is just like any proud mum as she looks at photos of her gorgeous, smiling son.

It's no surprise his cheeky grin won over a photographer who went on to use him for a shoot last year.

He's a lively youngster, full of hope and wants to be a fireman. Esther admitted: "I'm not going to say to him, 'You can't be a fireman because of your lungs'.

"That's something we'll face when he's older. I don't know if he'll even be able to work. But we have to stay positive.

"Some days, he's a bit low and asks me, 'Am I going to die?'

"And I say, 'The only way you are going to die is if you don't keep up with your medication and your physio'."

Callum just gets on with life. This year alone, he's been in Glasgow's Yorkhill Sick Children's Hospital every month. And he still needs to be attached to a feeding tube at night.

But one bright moment was a trip in a seaplane donated to Yorkhill Children's Foundation by McColl Jewellery.

"I'm so grateful to the person who donated it," said Esther. "They're making a child smile for a day, which makes such a difference to a child like Callum's life."

The Yorkhill Children's Foundation has launched a Christmas appeal in which you can write messages on paper baubles, which will be used to decorate the hospital, in exchange for donation. See www.yorkhchildrensfoundation.org